Thursday, April 30, 2009

Dis What?

So what is this dysautonomia crap anyways???? Well, for me to explain that, first I gotta tell you what your Autonomic Nervous System is. It's the system in your body that controls all the involuntary things that go on in a day. The things you don't think about. Breathing, blood pressure, temperature regulation, your bowels and bladder working........ It's responsible for making your 'engine' run. Did you know that everything in your body is ran off electrical currents?

Dysautonomia Information Network- says:
"Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates."

National Dysautonima Research Foundation- says:
"Dysautonomia is a general term used to describe a breakdown, or failure of the autonomic nervous system. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide ranging and can include problems with the regulation of heart rate, blood pressure, body temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness and cognitive impairment."

(BTW, both those sites have really good info on this!) with me?
So.... "dys" means impaired or dysfunctional...... And I just explained the autonomic nervous system.........So
In other words....My Autonomic Nervous System is dysfunctional. my head hurts! It crazy that I can totally understand it in my head, but when it comes to explaining it......I am at a loss for words.......
Brain Fog?? Maybe.....hahahaha.........

OK.....Now to really confuse you........
About.Com- says:
"The autonomic nervous system controls the “unconscious” bodily functions, such as heart rate, digestion, and breathing patterns. The autonomic nervous system consists of two parts: the sympathetic system and the parasympathetic system. The sympathetic system can best be thought of as controlling the “fight or flight” reactions of the body, producing the rapid heart rates, increased breathing, and increased blood flow to the muscles that are necessary when an individual is in danger or under stress. The parasympathetic system controls the “quiet” body functions, for instance, the digestive system. In short, the sympathetic system gets the body ready for action, while the parasympathetic system gets the body ready for rest. And in normal individuals, the parasympathetic and sympathetic components of the autonomic nervous systems are in perfect balance, from moment to moment, depending on the body’s instantaneous needs.
In people suffering from dysautonomia, the autonomic nervous system loses that balance, and at various times the parasympathetic or sympathetic systems inappropriately predominate. Symptoms can include frequent, vague but disturbing aches and pains, faintness (or even actual fainting spells), fatigue and inertia, severe anxiety attacks, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms such as irritable bowel syndrome, sweating, dizziness, blurred vision, numbness and tingling, anxiety and (quite understandably), depression.
Sufferers of dysautonomia can experience all these symptoms or just a few of them. They can experience one cluster of symptoms at one time, and another set of symptoms at other times. The symptoms are often fleeting and unpredictable, but on the other hand they can be triggered by specific situations or actions. (Some people have symptoms with exertion, for instance, or when standing up, or after ingesting certain foods.) "

Have I lost you yet?? lol
I know it's a lot to read....but I can't explain it any better.

........I'll let you digest this.....and I'll be back later to talk more about it.
Until next time.......

....moving along.....

So....yesterday sucked, too. LOL........Went to lunch with my bff, had my usual french toast with an over easy egg......and found myself in the bathroom before I could even eat half of it...I think my stomach is still on that crazy migraine ride from yesterday....It's going to take it a couple of days to balance itself out. We had to come back by the house, so I could get some 'drugs'...and then headed to Walmart for some groceries. (This is where I tell you that, that's my exercise regime for the week....A stroll around Walmart, woo-who! The bff has been taking me to lunch and 'walking' me for years now....It's nice to know that someone out cares, huh! Came home......spent some more time on the pot.......and watched movies all night. Woke up this morning......and my BM are still like water. OK........... enough all ready! Can we get back on track here??? Hahaha

Called that nurse again about my CT, and wasn't that impressed with her tone. Not like it's the 4th time that I've called her or anything. She said she tried to call the place last night and they were closed? Ummm? Why are you calling them at night??? Duh!! So, now she has me set up to do my CT at the ER?? Not sure if I understand why? She said she's not from the she didn't know where to schedule it.......I dunno......... most normal people would schedule the appt at the hospital, right?.......But what ever....I just want it done! So, May 6th it is.

Even went by the Physical Therapists office and set up my consult appt for today at 4. *This way, me and the PT can catch up and see where we need to start. Vacation is Over!! LOL

Still feeling Yucky today...Stomach is not ready to play nice yet......chest hurts~ breast pain? heart pain? Who knows?? ..........Very tired- Stressed!

*Cold sore is finally gone! Last part of the scab fell off yesterday :)

MUST DRINK FLUIDS!!!.....and go buy toilet paper. hehehe

Wednesday, April 29, 2009

I'm here.....

Just trying to get my electrical system in the house working right.........

And my body isn't helping much. I over did it again with the kiddos this weekend, got the bright idea Saturday morning that I was going to crawl under the trailer and clean ~that's where the electrical stuff is, and it's really hard to get to.......Not anymore :)!! Even thought about ripping out the power line to the TV in order to motivate someone to fix it, but didn't feel like playing that game, so I just cleaned. Took out 10 bags of trash...I know there was 10 because I counted them, haha .....And while I was up under there, I thought of 'my old life' and who I was suppose to be. Got to take out my frustrations while ripping out insulation!! Now that Was fun! .......I use to had a lot of spunk, and a Lot of drive.... Nothing was going to stand in my way ...Just ask my mom, I was very head strong to prove everyone wrong! I still have that desire to become more, but know it's not in my cards anymore. Sometimes I feel like this is a test, to prepare me for something bigger, but then I ask what in the heck could that be?.....You know how the old saying goes......That that doesn't kill you only makes you stronger?? .....Well enough already! I quit!

Last night I had a terrible migraine.....and nothing seemed to help. I took a half a Valium, and got enough relief to get dinner....But then the headache came back worse then the first time.......So I took a whole Valium, and nothing..... I went and laid down, but it just kept throbbing.....Then the vomiting began~ Fun! And after that I really felt drained, Yuck! I figured I'd try a bath to make the body aches go away......Not a hot bath, but just warm enough....And stayed in there for a few hours.......LOL, had all the cats coming in to 'visit'~ Otis even tried drinking all my bath water, lol, I swear....he just kept drinking, and drinking.....Normally he stays away from the tub~ Something about the bubbles scares him, but since I hadn't used any bubbles, he was really curious to see what I was doing. -Figured the smell from the bubbles might make the headache worse:( Anyways........once I was good and pruny, I got out...the bath seemed to have taken the edge off the pain. I finished up a Gatorade and watched TV for the rest of the evening.......

This morning, my headache is almost gone. Still feel drained! Woke up semi dry...... and even Remembered to take my morning meds! Woo-who! I'm on a roll! Now to go drink 3 bottles of Gatorade.............

Still haven't heard from the doctors office about my CT, so If I get the umph to get moving today, I think I'll just drive over to the hospital and go speak to someone......And while I'm over in that direction, I need to go set up Physical Therapy again.....I didn't realize it had already been a month since the last time I was there. Guess my vacation is over. Ya know, that's the one thing I hate about being sick....You never get a break! And I need a break! It gets really Old, really quick!

Thursday, April 23, 2009

Where did this all start?

My 'Electrician' (the electrophysiologist~cardiologist) seems to think that this probably started in my Mother's uterus..... Like something didn't line up right in my DNA or something. There have been things along the way that suggest so. My early heart issue~ I was diagnosed with a heart murmur at 4 months old. Then under went a heart cath at 18 months and was diagnosed with Mild Aortic Stenosis........and then some where along the line I out grew this?! I was sweaty as a baby, especially with eating or sleeping.........I had eczema as a baby, and psoriasis since I was a kid. Still get Eczema every once in awhile...and when it flares up, it flares up! The psoriasis is confined to my left ankle for the time being.....still a little confused as to why just one ankle, but OK. As a kid I had it on my elbows and knees~ got lots of rude comments about that issue! I've had IBS for as long as I can remember......just never knew it had a name as a kid. I remember sleeping on the bathroom floor because I got tired of running back and forth to the bathroom at night. I had a 'bone' that grew through my sinus cavity somehow that they chiseled away at 3 times. I had bladder issues.....lots of UTIs as a kid....and now that I'm glancing over my records, I see I also had trace amounts of blood in my urine even back then. I'm sure there's other things......somethings support the idea of dysautonomia, and other things are just flukes of nature. If I had a dollar for every time I've heard...I've never seen that before, or your never going to believe this....I'd be very rich. (My favorite was when I was on the OR table in the cath lab, and I heard my doc say "Um.....'John' Can you come here for a minute, I've never seen anything like this" .....Now, that's not funny....they shouldn't be aloud to say stuff like that, lol....We're they trying to freak a girl out or what??

Then again I'm sure going through 2 cycles of the Lupron Injections wasn't the best thing for me. Nor was the epidural I had with the birth of my last son, it didn't work for the delivery, but I don't think they believed me...It was left in my back over night so they could use it in the morning to do my tubal ligation, and it wasn't till they had me on the OR table that they realized that I might be telling the truth. I remember the doc pricking my leg with something sharp, and my flinching. Then the other doc asking him if he'd giving me enough..... Then that doc said 'I've given her enough for a six foot man, she shouldn't be able to feel her nose by now'...and like that I was asleep. Something wasn't right there, but, Hey, what do I know?? And then again...........I'm sure having 3 kids before I was 20 wasn't exactly good for me either. Took a lot out of my body! But, Like my Aunt once said to me.......if I hadn't of had them then, I might of never of been able to have them. So I feel blessed, And I get a reason to get up everyday!

So when one asks how this all started, I can't say for sure. Your guess is as good as mine, I just know it is was it is, and always has been. I just didn't understand a lot of it until recently. And still, I am horrible with terminology.......and terrible at explaining things with out confusing you first.

Next time I'll try and explain what dysautonomia means......
...called the nurse at the urologists office today to see if that CT appt had been made, and the nurse said she'd get to it before the day was over...............still waiting on her to call back?!

Bf survived the root canal, and rather amusing at the docs office. He doesn't go to the doctor when he does, It's a Big deal, lol. As he was filling out the forms...he was asking why they needed to know this or that, cause it had nothing to do with his teeth! Hahaha.....try filling them out 3 times a week, and now you know why I have it all typed up, haha....When I go in to appts, I take it with me, and ask them to copy it and stick it in my file. He doesn't go enough to have a list.....and had me giggling the whole time. Poor fella........

PVC's still active. Mild headache this afternoon. Dizzy...I did start the new weird side effects so far:)

Ideas on getting medical records:

Yesterday was a normal Wednesday.......Nothing too exciting. Still waiting for someone to call me back about my CT...I'm ready to get er' done! I did manage to get out the house for a couple of hours. My best friend is off on Wednesdays, and it's been tradition for about 5 years now for us to go out to lunch. And I get my walking in! My IBS did act up a little...and after dinner it started acting up a lot so I took a Levsin.....and all was better. Went to bed early.....tired as hell. And then sometime this was still dark out, I woke up really really nauseous.....And then spent 30 minutes in the bathroom vomiting. I never throw up....well hardly ever, ODD! Even when the kids gets the flu, it always skips me......I have never understood why, but OK. You know I've never even had the Chicken Pox either, all of my kids have and I was around them every day....and still never got it. Just one of those things I guess.

I did sit down last night and tried to find something from HIPPA explaining how to get YOUR medical records. A few years ago, I went into a neurologists office to get copies of my medical records. At first the girl told me it was against the law.......and I knew this wasn't true....and told her It was against the law for her Not to give me them. I left, went home, did my research and returned with a typed written request:

Dear Dr. X, March 18, 2008
After speaking to a lawyer about getting my medical records, it was advised that I
ask in writing for the records. I, Katrina X, am requesting copies of my medical
records from 2005. I also need copies of the EMG report from August 18, 2005. I will be
in on Tuesday March, 25 2008 to pick up these records. If I can not get these records, I
have been advised to contact the Medical Board.
Katrina X
DOB: 04-12-19XX

Anyways.....that neurologists office really fought me on it.....and I ended up getting my records before it was all over. Now, there was a $15 'research' fee...whatever that was.........Mind you, when I first went in to get my records......the lady turned around to the shelf behind her, pulled my records off, and had them in her hand....And yet I'm suppose to pay them $15 dollars to find it. WOW! I coulda gotten it myself.

So...My point? Federal Law states that we are aloud access to our records unless those records contain information about your mental health that could hurt you. Or something like that. Here's the link to this information:
......and if you scroll down they do have a place where you can find individual state costs for getting records. There's also a suggestion for how to obtain your records if your broke...

I know it's hard, and There Will be nurses and staff out there that will give you hell about getting them. But they are yours to see. I do believe you can even go in and request to sit down and look at them. I'm not sure how these Laws will change, seeing as everything is going into computer now. But they are your records! You also have to remember that they are only required to keep your records for so many years.

It also helped me that I kept every calendar that I ever used, and wrote down most of all the doctor appts I went to....It does help to have these dates.

Also......just ask your doctor for copies of things as they're done. I have been through my share of doctors trying to find the best of them, the most helpful ones I could. And most of them know I'm going to ask for copies of things, so they'll have them waiting. Or ask me if I want copies! Don't be afraid of them....they put their shoes on the same way we do, lol, I used to be so intimated by these people, but Not anymore. I have realized they are only human too.

OK...that's about it for now....I'm gotta take the bf to have a root canal done this morning.....Fun huh!
......Be back later......

oh.....My new neurologist has recently switched offices. And I got a letter in the mail stating that I had to come down and sign a release form to get my records sent to the new place. So I went in, signed the paperwork......Then got a bill for $18!! I have since talked to my neurologist and told her I thought it was BS......and she agreed. She said is was in her contract that her records went with her.....and told me not to pay it. She has since gotten my records, and told me I could get my copy the next time I come in. As far as not paying that bill, I don't know if that's a great idea, I always end up on the shitty end of this stick, and could just see myself now getting dragged into court over $18. For $18, I want my own copy, Please!

Wednesday, April 22, 2009

Survival Tips

Finally got my meds straightened out. You know...about 2 years ago I refused to take any medication! I had taken bladder meds and it made my bowels stop....and the hormone therapy is the suspected culprit for my PVC's.....So, I was at that point where I wanted to rid my system of all that junk, and see where I was at. I still refuse bladder meds.......My bowels hurt way to much to not have a bm everyday~ I know, I know...You really need to hear about my BMs, huh. But seriously........My bowels are very finicky...And I've learned the hard way how to do this. Well get back to this in a minute...First lets get back to the meds. it is a couple years down the road.....and the top shelf of my bookcase now looks like a small pharmacy.

Current Meds are as follows:

*Metoprolol 25 mg 2x a day (For SVT~ fast heart rate)

*Amitriptyline 25 mg 1x a day (For Migraines, depression)

*Valium~ Diazepam needed for everything (muscle spasms, migraines, sleep, anxiety) I use about 10 pills a month...

*Levsin 0.125 mg~ as needed for bowel spams.....can't take them too often or bowels slow down

Recently started:

*Fludrocortisone (Florinef 0.1mg....still reading about this one..... used to treat Orthostatic intolerance)

Also use:

*Prelief for cutting the acid down in certain foods you eat.

*Tylnoel for headaches

*Mucinex DM for congestion~ doesn't interfere with heart rate!

*Abuterol inhaler used when needed.....seasonal

Other measures used to cope...

Diet! No fried food. No caffeine or NSAIDS. No cold drinks~ room temp is best. NO CITRIC ACID~ well at least try and avoid it! Fiber when needed~ stomach is so 'simple' a bowl of Raisin Bran can make it go either way. Lots and Lots...and then some more Fluids! Gatorade every day! Oh...and start each day with a glass of Carnation Instant breakfast...easy enough for my stomach to digest first thing in the morning, and I get a good dose of nutrients! Hot baths help with abdominal issues, but don't help the heart issues. Showers totally wear me out.....Laying down to catch my breathe after helps!

*And another key to survival is to have a good 'team' of doctors. I have been through my share of doctors....and I do believe I have finally found some really great people. Most of them are younger, they tend to think more out of the box then the older folks do. They don't work together..but are now linked up on there online system they have here. And they all send updated letters to my primary care doctor on a regular bases. I have been through a few PCP too before I finally found one that was willing to sit down and look at everything......and not insist that I was crazy. I guess it helps that I see a head doc to who agrees that I'm not 'Crazy'. I feel crazy some days....and there's some doctor out there that I'm sure will say I was crazy. I do tend to act a little off my rocker when people don't listen. Especially when they insist that I get psych help to then see my insides fall out 3 days later.....So, who's really the crazy one here? Me for knowing something was wrong....or them for not even bothering to look until it was in their face?! Yes I have some hang ups about that whole period in my life. I'd still like to wrap my fingers around a certain ladies neck and choke the stupidness right out of her! All I can say is Karma has a funny way of coming back around, doesn't it.

Well...I guess that's enough babbling for day.....Until next time!

OH Wait....One more thing.

Medical Records.....Start collecting your medical records now....I have probally 75% of mine.....and it helps. It helps you remember where you've been and what was done, said, ect. I have a master list of surgeries, with the date, procedure, hosipital, and surgeon written on it....Then I have another list of all the doctor appts, tests, ect. I have had since I was an adult. My childhood records are about an inch thick, in one of those orange military files, and you can barely read it....but I have it! My adult records stack up to be about 2 feet

It's alot easier to show someone what your heart rate looks like than it is to try and explain it!

Tuesday, April 21, 2009

How should I know??

Last week is finally catching up to me...all I want to do is sleep!

I got a package in the mail today from the seems they tried to call me Friday and due to my phone not working , I missed the call. So they sent me everything I needed. I'm scheduled for a Cystoscopy in the beginning of July. Still waiting on my appt for the CT...i tried to do it earlier, and the scheduling lady had me so annoyed, I told her Thank-you for Not helping me, and hung up. Then I called the nurse at the doctors office, explained to her what had happened, and she said, she'd take care of it. I'm just waiting on her to call me back.

And I probably shouldn't of been nasty to that lady, but she was really working my nerves! Kept asking me questions that I didn't know the answers to, and when I told her I didn't know....she replied with something along the lines of Well, the computer won't let me go any further unless I answer this question....Very annoying! How do I know what the diagnoses is? The stupid test hasn't been done yet?!?!?!

Went and saw my head doc this afternoon. Babbled on the whole time.....fussed about how I wish someone could just wave a magic wand and make it all go away! Got a headache from crying.....and now I have a migraine from that lady!!

Still have to go to the pharmacy to pick up my meds....and then head over to my youngest one's school for his recorder concert...that outta help the headache, huh! LOL....Anything for the kids!!

Woke up soaked this morning.....heart is still skipping beats....and my back hurts.
Other than that pretty normal far.

Monday, April 20, 2009

Explanation of the Pictures...

Thought Id explain some of the pictures on my sidebar for ya. The first one is me....taken when I was around 24ish? I edited it a little...Thought It looked better in blue.

Next we have the one that reads "And how do you feel today?" I did that one about 4 years ago....Got really frustrated one night cause I was tired of explaining how I felt...and got to thinking...If I could just draw a picture, and so I did! ..... Yes, The white part across the legs is suppose to be white...I can't feel anything in this area? Nerve damage with surgeries~ so I left it blank, lol.

The Profile Picture is of me and My Mom in Scotland....We're on one end of a see-saw, and my Dad was on the other....

Next is the one that Reads "Art that soothes my soul" This is one of a collection of colored pencil drawings that I did in my early 20s. This one is the most kid friendly, so that's why I have it up...

LOL...Next is a picture I did the night I was in labor with my oldest....I was 16. I got the original picture in school, it was a watercolor done by someone else. Never did manage to keep that artists name...Anyways, I did it in colored pencils. Sat at my Mom's kitchen table 'coloring' all night!!

And the last photo is of the balloon that was in my abdomen for a month, holding my bowels up.... Some days I still just have to look at the picture to believe it wasn't just a bad dream. Unreal!!!!!!

Art has helped me get through so many obstacles in life. Some people run, some people eat, some people turn to naughty vises......I color, lol.

Sunday, April 19, 2009

The stages of Grief

When I started Counseling for the second time.....the first thing they taught me was about Grief and how when your diagnosed with an illness, that you will go through the same process.

I found this link which explains it a lot better than I could....

For's where I'm at with each of these~

*Denial: I think I'm passed this, I know it's here to stay and that it is what it is........I wish people around me could get over this part, though!

*Anger: This I go through often! I'm still pissed at a few doctors.....I have big issues with religion over this...... and, well, I have people issues in general.

*Depression: OK, now who wouldn't be depressed.....I can't have the life I want, I have to settle for second best. Some days, I look at it as if this is as good as it gets. And other days I'm on some crazy mission to be something I'm not any more. I want more outta life than this...

*Bargaining: Yup! Still have days where I think I can run from it, but believe always follows. lol!

*Acceptance: Funny thing is, I do accept this, I've been living it for over 10 years now....Again, I know, there will be good days and there will be bad days........I live for the good days. And yet another one of those things I wish people around me could do more of.

The first time I sought mental help.....I was still trying to play wonder woman. The doc I saw at the time spent many, many sessions trying to convince me to Slow down. She told me I needed to accept that this may be what it is, and that I was going to drive myself crazy trying to change it. I didn't listen to her....I still had a lot of drive left at the time, and I refused to accept this for what it was. I felt like I could change it! I needed to fix it! And then, I crashed and burned!!!

I can honestly say it is easier learning to live with it, then it is trying to fight it. Takes a lot less energy!

Just ranting....

Today's symptoms:

PVC are still present......Stress??

Left breast hurts and the pain/numbness is still running down my left arm........makes one wonder if it's coming from my breast or my heart?? Not a really pleasant feeling.

Cold sore is healing...

Managed to get in a two hour nap this afternoon.......I'll be able to catch up on my rest this week, when the kids return to school. No doc appts scheduled yet......Still awaiting call from Urologist, but seeing as the phones have been down here, not to sure if he's tried calling...Will have to take care of this first thing tomorrow.....and ask for my meds to get faxed. They were suppose to be faxed over on Friday, but pharmacy has still not received it.....Just a little frustrating.

Now as far as my emotions are going today.....They suck! Just having one of those days when reality hits and I feel like I'm stuck between a rock and a hard place. You see I haven't worked in almost 5 years. I've been trying to get disability...but have been turned down due to my age, and level of education. The judge feels like I could do a sit down job or something. I used to manage a fast food restaurant...a job I loved! Loved the fast past of the rat race, and the hours, and the money.....and the health insurance! But I know that my heart would never allow me to keep up in that world again. I could just myself spinning around to do something, passing out because I moved to fast, and falling over into a fryer or something. But that doesn't mean that I don't miss having a 'career'/ Yeah, I know fast food isn't a career that one grows up wanting to be, but it was where I ended up, and for the most part I loved it. The people made it little hard on me most days. Other employees didn't get why I got certain days off.....or gripped because I was taking too much time of. Some days were just bad days, and when you don't 'look' sick, some people just don't get it. (This was also before I finally got a good heart doc to listen to me.....a time when everyone still thought I was crazy.) I live with one of those kind of people.....which is the whole reason I'm in this frame of mind to begin with.......I AM SO TIRED OF LIVING OF A MAN'S MONEY! Life was a lot simpler when I had my own money, when I had control. Being sick has sucked the life right out of me. I barely have enough energy to argue with the kids...I damn sure don't have enough energy to argue with a man about something I have no control over. It's days like today when having a pacemakers sounds good. I want to be able to run circles around that ass and show him, that's it's not 'me' that's doing this....that's it's my dysfunctional electrical system. I have giving up so much already. I didn't finish was the first thing I took out of my life in order to better control my stress went the job. I can't give away the kids.....They're the whole reason I get up everyday. They're the whole reason I haven't shot myself yet. They didn't ask to be brought into this world, I wanted them........I don't care if it kills me in the process, I will never give up on giving my kids the life they deserve! The only other stressor in my life happens to be the person that keeps a roof over my son's and my head. Somedays, it's just so much easier to listen to it, but then I ask it really worth the bs??? If I could hold down a job I would.......but I still haven't figured out how to work around the surgeries, and the Physical Therapy, and the tests, and doctor appts.......And the kids and their doctor appts....... Who's gonna want to hire someone with this??? I know I wouldn't.

There's so many what's hard! I guess I'm just going to have to bite the bullet and do something......I need my independence back!

Saturday, April 18, 2009

Gotta love the night sweats!

Woke up 'damp' this morning. PVC's are still annoying me, and my breast pain is running down my arm......But I've got a smile on my face.........And there's no one in sight! A whole day to myself!! WOO-WHO!! Now let's go see what I can get done.

Friday, April 17, 2009

Today's Verdict...

I saw my Urologist today.....for a 3 month check up.

You know, it's always fun at this docs office. Some days I'm not a very nice person, and some days I can tolerate anything. You see, he's part of a team of doctors that are affiliated with Eastern Virginia Medical School. Yes, I see the best of the best more wasting my time auguring with doctors about something I know 'is what it is'. But the thing about being seen at a 'Medical School', is you also get to entertain medical students. Now, way back when I had my kids, I lost all hopes of ever being a modest, Come on, You know you get to a point where you don't care who looks....but now, on my evil days...I don't want 3 eager (males in their early 20's) medical students peering into my vagina to 'have a look'. By now my doctor knows that I do lately I have noticed that he only sends in one medical student....and they have all been know the day he sent those 3 poor students into my room, they had no idea what kind of a day they were about to

But, like I said, with time, me and this doctor have come to understand each other....... And I think he's amazing. He actually listens, and will sit and talk with me if I need it. And when I tell him I think something weird is going on, he doesn't insist that I speak with my shrink I've done several rounds of physical therapy, just finished up 13 weeks of it not to long ago. I know, I should be in continually PT, but sometimes, even I need a break. It has become my 'job' to take care of myself. I'm learning as I go.....some good, some bad.....but I'm learning.

So, my visit went well. My blood level in my urine read "LARGE" ~ I know this because the nurse wrote it in such big letters I could see it from across the room....don't worry, this is normal for me.....I tell the doc all the time, that the day he tells me there's no blood in my urine, is the day I'll get scared! I have Interstitial Cystitis (called IC for short) and have had it for almost 10 years now. Before I was diagnosed, the docs thought I kept getting UTIs, and told me to drink lots of Cranberry juice........And I drank a lot of Cranberry juice, so much I started peeing straight blood.....that's when they sent me to a specialist and I learned about IC. Did you know that they call Cranberry Juice the Acid Bomb in our world.........It has more citric acid than anything else.... Over the years I have learned to try and stay away from citric acid, but it so hard, as it's in almost everything. One day I'll drop of the 'can eat' and shouldn't eat' list....and they wonder why I have 'eating' issues.....they took all the good stuff away from me, haha! my doc is scheduling me for another Cystoscopy and a CT of my abdomen. Just routine follow-up....haven't had either one done in a couple of years, so we just want to make sure everything is still where it belongs. I have one ovary left, that normally has a cyst sitting on it, and a hole in my kidney?? The whole been there forever, say it's just a birth defect...nothing to worry about, and so far in life, I haven't had any problems with it. Both are pretty simple tests......a walk in the park for an ole' pro like me.......Hahahaha!!

.....My doctor did say to me today, that I look better than I have looked in a long time!! I'm starting to finally gain weight more hollow cheeks here!

Other symptoms today:

~Left breast cyst is hurting.......I'd like to cut it out myself! Good thing I can't stand the sight of blood, huh!

~And my heart's been skipping beats again today.........Again, normal for me.............I was just hoping we were past that part of it all. The EP doc told me that one day they could come back, but I was hoping to get a little more than a year an a half. They're still not as bad as they have been.....But they do drive me crazy!!

~Oh, and I have a cold sore that started about 2 days ago.......Either it was stress, or getting dehydrated....or the combo of the 2. Damn Lip.....hurts like a son of a gun!

Thursday, April 16, 2009

Hello....It's nice to meet you!

Welcome to a place where I will teach you to make the best lemonade outta life. This entry will be short, just wanted to get this blog started before I change my mind.

I'll be back sometime with all kinds of interesting things...
Until then....